Remicade tomorrow

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mom2panda
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Date Joined Oct 2009
Total Posts : 713
   Posted 1/23/2011 8:12 PM (GMT -6)   
I am starting remicade tomorrow morning. Excited, nervous, and just really hoping it works. Fingers crossed!

For those that have taken remicade and had good results, how long did it take to see some improvement?

Thanks!

edited to add - signature didn't update, even though I updated my profile?
Female, 41 yo • Diagnosed UC Sept. 24, 2009 - Mild-Moderate Left-side. Seem to be prednisone dependent. Currently in 3rd attempt to get off pred.

• Aug.3/10 -Can't take 5-ASA, or Imuran. Remicade is next option. • 0 mg pred (Dec. 9), VitD 4000IU, Fish Oil, Probiotics, Calcium • Other: Synthroid, Pantaloc

WIMOMOFTHREE
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Date Joined Apr 2009
Total Posts : 654
   Posted 1/23/2011 8:24 PM (GMT -6)   
Don't worry for me the remi took awhile so if i were you I would give it awhile I went on it in july 2009 and while it helped with my symptoms I was going about 4-6 times a day still but I had a scope in March 2010 and it showed that my colon wasn't healing. I still had severe uc throughout my whole colon. My doc wanted me to go off it but I said it is helping me and she said we can't have you on the med if it isn't healing your colon because you could get colon cancer. I said give me six more months. I just had a scope last week and it came back that me left side is completely healed and that my right side has mild ulcers and inflammation. So it is working. I still go about 4-6times a day some days 2 times it depends on what I eat. I also get tylenol and hydrocrodisone before my infusion because I get chest pain, it is heart burn so I take prilosec, and I get a little bit of a rash so I take zyrtex, my first infusion I got chest pain(which we figured out was heartburn from the remi), I run slow because of it. They don't go past 65, most go 150. I'm there from 9-3 every eight weeks. They upped my dose to 7.5 in august 2010. Most people are out of there in two hours. Good luck, I hope it works for you it has given me my life back.
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 1/23/2011 9:01 PM (GMT -6)   
I just  started taking Remicade in Mid December.  I have been in a flare up for the past few years.
The NEXT DAY I noticed a difference. I went from going 15-20 times a day to going 5 the very next day. 
I still have some bad days when I eat foods that dont' agree with me. But for the most part I see a huge difference.
So far (knock wood), I have no side effects or none that I noticed.
 
Hopefully you will see the same results


Rowassa, VSL #3DS, Colozal (9 Pills), REMICADE
36yr old, Male

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 1/23/2011 9:58 PM (GMT -6)   
Remicade worked for me immediately!
I was so excited to get that first infusion that I cried a little. I still tear up thinking about it!
I just knew it was a turning point for me, after a long, long time of dealing with UC.

Think positive! Good luck!
49 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade).
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

Yazzy
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 1/23/2011 11:19 PM (GMT -6)   
It took me 5 infusions before I finally felt a difference. But now there is a huge difference, I have my life back. The only side effects I have noticed is joint pain a week or so before my next infusion and some hair loss. Good luck!
Diagnosed with ulcerative colitis summer of 2008. I have had symptoms for 10 years.
Last diagnosis was pancolitis and chronic pancreatitis.
Have tried asacol, lialda, steroids, imuran, and currently on Remicade. Started having symptoms 3 weeks before next infusion so the doctor changed it to every 6 weeks.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6569
   Posted 1/23/2011 11:53 PM (GMT -6)   
when i started it the next two days i was worse, but my GI said that does sometimes happen, but then i started wtih some improvement, and by about 5 or 6 weeks into it was great. It didn't last for me though.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 1/24/2011 8:09 PM (GMT -6)   
Thanks everyone. Had the infusion this morning, and.....I haven't gone to the washroom since. No cramps either, and even my energy is better. :)) Not sure that this the real deal, but I am optimistic. Tomorrow morning will be the true test.

Signature is still wrong - Remicade Jan 24, 2011
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade starting Jan 24/10

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 1/26/2011 7:51 AM (GMT -6)   
That is great!!!!!! I hope this works for you. turn
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6406
   Posted 1/26/2011 10:48 AM (GMT -6)   
Awesome! I too had the same next day results; no cramping or bleeding. I shed some tears as well, and the biggest hurdle for me was not feeling like I need to run to the bathroom all the time. It was a strange feeling! After five years I'm off Remi and in remission. Good luck and hope you continue feeling well!

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 1/26/2011 10:48 AM (GMT -6)   
Good Morning!!
 
So glad you took your first dose! I too, am relatively new to Remicade. I had my 3 loading doses in Nov. and Dec. 2010. I noticed a big difference for a few days after my first infusion, then not really any after my 2nd and 3rd. I have developed really high fever, 103 some nights, that just goes up during the late night, and early morning hours. I have had blood work, urinalysis, x-rays, and nothing shows up. They say I am very healthy, so I am assuming this is a delayed side effect of the Remicade. I have noticed a lessening of symptoms since the fever started (I have run it every night for almost 2 weeks) but I feel pretty rotten.
 
I am encouraged by what I read, that it takes some longer to see effects. I will keep on it for now, and hope for the best.
 
Has anyone else had this high, unexplainable fever?
 
Hope all have a wonderful day!
 
Fondly,
Daffodil

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 1/26/2011 11:42 AM (GMT -6)   
48 hours after Remicade - rough morning yesterday, but overall a decent day. By the end of the day, I was seeing some formed stool, and no visable blood. This morning started out with a 5 am and the 6:30 am wake up call to the washroom, but it was all formed. After that, things deteriorated and I have since had an additional 6 BM's with varying degrees of looseness/D and some blood (but not as bad as before), for a total of 8 this morning.

Anyone else have this roller coaster when starting remi?
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6406
   Posted 1/26/2011 11:46 AM (GMT -6)   
Yes, it took about six months until I was down to about 4 per day. You might try some rectal meds to get you over the hump.

Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 1/26/2011 2:19 PM (GMT -6)   
It wasn't until my 7th infusion that things turned for the better. Hang in there... just be patient.
Presently on: 600 mg. Remicade every 5 weeks
Venofer infusion every 5 weeks

B12 every 5 weeks

12 Asacol daily

Zofran as needed

Dealing with Colitis since 2003, Gastro-Paresis, Reflux, IBS, GERD and Gluten and Dairy Intolerance and last but certainly not least - Arthritis. Am officially a senior citizen - how lovely :P
"Food is in my dreams and in my nightmares!"

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 1/31/2011 8:25 PM (GMT -6)   
1 week post-Remicade. Whooo-hooo! Feeling great! Down to 3-4 BMs (last two days), no bleeding, mostly FORMED stool, and only a bit of gas/mucous. Before Remicade, I was going 12-18x per day, all D, and bloody. I was exhausted and just feeling awful.

I am doing my happy dance, and hoping that this continues to work for a very long time.

Thanks to all those who offered their support.
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 1/31/2011 10:25 PM (GMT -6)   
Yay! That's great news! I'm so glad you are seeing results so quickly!
Jennifer
Current Meds: Remicade (5mg/kg), Rowasa (4g, as needed).
Past Meds: Canasa, Hydrocortisone Enema & Supp., Oral Mesalamines, Imuran, Oral Prednisone 2/10-9/10.
Current condition: Delicate Remission. Riding the Remi-coaster!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10090
   Posted 1/31/2011 11:11 PM (GMT -6)   
wow, sounds like you've already healed a ton. wonderful to hear.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6406
   Posted 2/1/2011 9:36 AM (GMT -6)   
Excellent news, continued healing to you! :-)

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 2/4/2011 6:15 PM (GMT -6)   
Okay, so after all the fantastic stuff earlier this week, I seem to be getting symptomatic again!!!!! Is that normal?

I am scheduled to get my next infusion on Wed (at 16 days, instead of 14 days since the first one).

I kind of thought that the good results would last longer??? Will the second infusion help again?

Feeling SOOOOO frustrated! As usual, just when I think things are better, they take a down turn. Seems to happen all the time with this stupid disease.

Sorry, just need to vent!
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6406
   Posted 2/4/2011 6:24 PM (GMT -6)   
What sort of symptoms are you having? This kind of is a normal pattern; I can remember when I first started the Remi that I would "know" when I needed an infusion because I'd be tired, loose stools, more frequency. Are you taking a probiotic right now?

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 2/4/2011 7:54 PM (GMT -6)   
Those are the same symptoms - tired, D, bit of blood and more frequency.

I was taking a probiotic for a long time, but I never found it did much good. Maybe I should go back to it. I only stopped taking it about a week ago....

Thanks, it is reassuring to know that this is the norm. Fingers crossed that things improve again after the 2nd dose.
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6406
   Posted 2/5/2011 11:03 AM (GMT -6)   
I remember this happening for about 6 months after starting Remi, and I remember feeling like a cloud had lifted and I started feeling even better. Remember that your body is healing now, and that you will be tired from a brand new med being in your system. Our bodies are so intricate that it sometimes takes awhile to start feeling better. I would suggest to start taking that probiotic again. I also take Magnesium and Vitamin B-100 (B-12 and Biotin) and this might help you too with the energy. Take care, keep us updated.

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 2/6/2011 9:20 PM (GMT -6)   
Thanks all.

I have wondered lately about how much rest we need to allow our bodies to heal. After two days of lots of rest and tons of sleep, my symptoms are much, much better.

I noticed over the past few months that when I did my regular exercise routine and classes, that I was exhausted for at least 2 days afterward, and my symptoms would become exacerbated. So, since I had been feeling so well after the remi infusion, I decided to go ahead and shovel all the snow that had fallen. It was a pretty good workout. But, low and behold, I was exhausted for 2 days and my symptoms became worse. Coincidence?

Anyway, interesting to ponder. I am going to put up a new post about this. I am curious.

Things are better at the moment. Not as good as the beginning of last week, but much better than Friday. Just have to hold on until my infusion on Wednesday, and hopefully things will get better again.
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5465
   Posted 2/7/2011 8:06 AM (GMT -6)   
     mom2panda....are you completely off prednisone or still tapering?

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 2/7/2011 2:53 PM (GMT -6)   
Off since Dec. 9/10
Female, 41 yo • Diagnosed UC Sept. 24, 2009- 50cm (far as flex would go) Prednisone dependent. Remicade Jan 24/11. Endocort taper for next month.

•-Can't take 5-ASA, or Imuran. • 0 mg pred (Dec. 9/10), VitD 4000IU, Fish Oil, VSL#3, Calcium • Other: Synthroid, Pantaloc
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